A Much Needed Update

Retaping Rex's NG tube 

We stole Charlie away from work for the day to go see Rex's surgeon 

Rex's favorite person

Charlie and I both had colds on Valentine's Day so this is as good as it got

Tired of being at the doctors all day

Rex pulled out his NG tube in the middle of the day so Charlie had to run home to put a new one in

Great Grandma at the pediatrician with us

Ellie going to get her hip x-ray

Rex is huge now! 14.5 pounds 

Visiting Daddy for lunch

New toys from Rex's vision therapist 

Best part of the day when Daddy comes home! 

The last time I wrote was February 6th and it's now March!

Ellie is doing well. Her weight gain has been kind of yo-yo-ing with two good weeks and then two bad weeks. Her pediatrician feels ok about it because it should all even out, she is just so tiny even for her adjusted age. We are waking her up to feed her every four hours throughout the night which works out because Rex needs to be fed every four hours too. At our last pediatrician appointment it was suspected that she could have hip dysplasia so we went and got an x-ray to double check. Thank goodness she doesn't!

We have been working with speech therapy in hopes of getting Rex to go back to taking all his food orally. Our goal was 6-8 weeks with the NG tube before either returning to full feeds or making the switch to a G-tube. The crappy thing is the more we worked the worse things got. Rex no longer takes any food by mouth and often gags then throws up on his binky.

When we met with his GI doctor at the beginning of February she said she wanted to see him gain some good weight and be healthy before she would consider a G-tube. That was kind of a shock to me because I thought we would start moving forward with it at that point. Scheduling is crazy and hospitals are stupid and we ended up not being able to get another appointment with her until the 13th of March.

After talking with Rex's neurologist we got more insight as to why this could be happening. Babies have a sucking reflex that helps them eat as newborns. When a baby gets to be about four months old that reflex fades and the brain has to use more cognition and motor control to coordinate eating. Well Rex's brain bleeds happened right around the part of his brain that controls motor function and we believe that on the right side of his brain (where the bleeding bursted out of the fluid filled sac and onto the actual white matter of the brain) he is actually missing part of his motor cortex. So it makes sense that as he came up on four months adjusted he just "forgot" how to eat.

On top of losing his sucking reflex he started having reflux (don't get the two confused haha). Although his brain is having a hard time coordinating the muscle movement, he is a smart kid and he figured out that eating made him reflux and reflux hurts. When we were admitted to the hospital they hoped that we would be able to get the reflux under control and he would understand that eating was no longer painful. They all old me it would get worse before it got better, but it just keeps getting worse. The day after we placed his first NG (in the hospital) his eating really went downhill. We brought him home from the hospital and a month and a half later he has stopped eating completely.

Once the speech therapist, neurologist, and GI doctor all talked, his GI doctor called and said that if Charlie and I feel that a G-tube is best for him that she would ok it and we could move forward. Basically we don't see this being something that will be fixed in the next few months, but may take the next few years to figure out. The NG isn't a solution that will work for the next few years.

We met with a pediatric surgeon yesterday, she showed us what the tube would look like and how it would work. She said G-tubes are great 90% of the time, but 10% of the time there is tissue growth where the body is irritated from the port and there can be leakage from the stomach. Hopefully we are the 90%, but given Rex's track record he is pretty good at beating odds.

Since he will have to be intubated and put on a ventilator for the surgery we want to get the most "bang for our buck." He will be getting an MRI at the same time. This will hopefully help confirm his diagnosis of CVI and give us a better picture of the severity of his Cerebral Palsy. I'm anxious to know more about his brain and I"m kind of at the point where I don't want to know, but I do. Knowing what is really happening can help us get the best types of therapies and interventions to give him the best life possible. It will take a little bit of coordinating to get everything set up for his surgery and the surgeon expects him to be in the hospital for one to two days after if everything goes as planned.

Having a medically complex kid is no joke, we have already hit our out of pocket maximum for Rex's insurance this year. We work on therapy at home everyday and we probably overanalyze things way too much. We are so excited to get a G-tube, which is funny because back in October that was my worst nightmare.